Our Unique Girl

Hi Everyone!

So sorry for the delay in the post, but overall we've had some good days!

Ella got her trach put in on Wednesday and seems to be so much more comfortable. It is such a huge blessing getting to see her cute little face without the big "white mustache" of tape on it. She has been able to be much more alert and interact with us. It has been really sweet to see. Her surgeon said there didn't seem to be any issue with her anatomy so he would hope she can get weaned off of the trach. We've been told that she may have the trach for any amount of time from 3 months to 3 years or more.

We started our home care "classes" as well. The nurse that is head of cardiac education, Cindy, will be teaching us about everything that we need to do in the "interstage". The interstage is the time between the first 2 surgeries. This is the time that is most risky with HLHS babies. There are things that can happen to the shunt that would result in losing her. We will have to closely monitor her fluid intake/ouput and oxygen levels along with other things. It seems like a lot right now, but all of the nurses have ensured us that we will be totally fine because we've been so involved so far. I'm definitely not shy and ask a ton of questions (shocker, I know! 😉). Cindy gave us a binder with different things we have to record and memorize before going home. We will later stay in the hospital room for 48 hours straight (no leaving at all) for the nurses to make sure we know what we are doing before they discharge us.

Cindy also informed us that Ella is even more unique than we thought... THEY HAVE NEVER HAD A SINGLE VENTRICAL BABY WITH A TRACH! She has worked here 30+ years and hasn't seen one. Lucky girl, huh? 😆 I am sure that Ella will be one of those walking miracles that defies all odds. Cindy told us that there is a lot to learn with a baby with HLHS (the most severe/complicated heart defect), and now that we have trach, we've got even more!

The blood clots are our major concern right now. When Dr. Hill went in during the cath and he found the clots are all along her neck and down to her heart. So they are much bigger than we anticipated. 😕 these vessels are used to connect blood flow to her lungs in the second surgery.  If these clots don't go away she won't be able to have the second surgery... if that happens then we are prolonging the risky interstage... Please pray for a miracle with them. We don't want to go in and remove them because there's a big risk that a part of it would get dislodged and go to her brain causing damage. We haven't been able to be as aggressive with the anticoagulation medication because of the brain bleed from a while ago. So we have been asking God to give us a miracle with these, just as He did with the pacemaker. We switched her anticoagulation medication to another longer acting one. This is a little risky because of the brain bleed.

Ella also has a wound on the back of her head that has been there for a while. It went away and then it came back a couple of days ago with a vengeance and opened. So we are hoping that will go away soon as well.

Some really great signs of progress are that Ella now shares a nurse with another patient and we no longer hear the beeping that kept track of her heart rate and SAT levels.

Eli has been more interactive with Ella and loves to stroke her head and hold her hand. It is so sweet. He's the best big brother. 💙

Love,
Jillian